Chronicling a very special way of life

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blog awards

Thank you A Figment of Fitness for the nomination! I had no idea you were following me and wouldn’t have known had I not checked my Referrers sections–what a pleasant surprise!

Rules:
(01) Thank the blogger who nominated you and link back to their site.
(02) Put the award logo on your site.
(03) Answer the questions the tagger has given you.
(04) Nominate ten people, and
(05) Make up ten new questions for those people to answer.

My Questions

What made your today most special? There are a thousand special moments in my day. When I take my first steps; when I drink organic fair trade coffee and think of all the people who harvested it for me to enjoy in that moment; when I drink it out of the cup I bought in San Francisco, an impossible yet fulfilled dream; when I take my pain management medication and know that I’ll soon have enough relief to actually live another day; when my dog, Muffin, and I see each other for the first time; when I hear the birds outside chirping; when I turn on my music and can forget that I’m sick; when I turn on my phone and see text messages from loved ones; et cetera. What made today even more special was being able to work on this website, at my leisure, without much suffering to distract me, and create a new blog post. Lately all of my energy has been spent toward coping with new challenges, and it hasn’t left me with anything remaining to actually do things I WANT to do.

Why do you blog? What a wonderful question. This blog started because I felt I was talking too much about health problems on my personal journal. I needed to write it down somewhere, but the way I was doing it made it seem like that’s all I was: Someone with health problems. So I made this separate blog to keep up with my symptoms, treatment, and developing issues. I made it public, and a few friends followed, but I didn’t think many people would actually read it–now, every month people from over 45 countries visit my site, to my utter astonishment. Somewhere along the line I realized my way of thinking and writing was helping people, so now I feel like I have to keep that in the forefront of my focus, because with that also comes a responsibility to make your intentions clearly known, and not use words carelessly. Luckily, this is also a main part of being Buddhist, so they both teach me to be mindful. Now my blog is less about every new health development as it is how I feel about living with them and what I’m doing to continue enjoying life.

What is one thing that you wish people understood about you? Maybe I used too many brain spoons on the first two questions, but, I don’t know…!

What is on your desk right now? If you’re not at a desk, describe your surroundings. I’m using my overbed desk and all it has on it right now is the remote to this adjustable bed and my cellphone (face down, because no distraction). Oh, and the laptop!

What is your favorite season? Describe how it makes you feel. AUTUMN!!!!! The weather makes me feel my best, symptom-wise, which is a major perk. Since it’s started, I’ve been able to drop 400mg off of my daily ibuprofen dosage and 3.25 off my percocet. I love the cool air; being able to keep my windows open even at night, and listening to the frogs and crickets; making a pallet on my porch to sit outside with my dog, a cup of coffee, and read, or listen to audiobooks, or draw zentangles, or just watch the leaves fall and enjoy the fresh air. Fall has always felt like the real beginning of the new year, to me. Plus, it is THE BEST season for theatre! The best dance performances, orchestras, and singers come to town.

What do you do when it is o’dark-thirty and you are stressing so much you can’t sleep? I don’t. There’s no point in berating your body for not being able to fall asleep, or cursing the moment for not being what you want. It is what it is and your body will fall asleep when it’s able. Audiobooks almost always put me to sleep at some point, or at least help me enjoy that time.

What is your obsession? Nothing really comes to mind! There’s a lot I’m passionate about and/or really enjoy–music, learning, reading, documentaries, dance (watching), but I can’t think of any one thing I’d call an obsession.

When you are walking down the street, do you pick the street side or the building side of the sidewalk? …What?

What is the town you live in like? It’s the halfway point between a large city and small town. Not enough people to drive you crazy, not small enough that major necessities like hospitals and doctors are missing. Outside friends who visit have told me that the people here are nice, but I’ve been around nicer, aha!

What is your favorite quote? Oh, lord. I’ll just put a few that I like, because I have tons.“When there is no enemy within, the enemies outside cannot hurt you.” (African Proverb)“What would you be like if there was nobody else in the world. Who would you be if the only opinion that mattered was yours. Because if you want to be truly happy, you must be that person.” (An Englishman in New York)“When a tiger, a powerful creature, forgets who he is, he will allow himself to be intimidated by a whip and a chair.” (Iyanla Vanzant)“Never pretend to a love which you do not actually feel, for love is not ours to command.” (Alan Watts)“Science is how God thinks.” (Deepak Chopra)

The Nominees

Documenting M.E.(I know it’s next to impossible that you’d have spare energy to do this, but I’m still including you!)

Like this:

One of my most interesting fellow bloggers and best of friends, Luna at Queen Cicada, has nominated me for my second blog honour, The Liebster Award! It’s German for “sweetheart,” from what I can gather, and it’s interesting-enough, that’s for sure…

Rules for the Liebster Award:
(01) Post eleven facts about yourself.
(02) Answer the questions the tagger has set for You.
(03) Create eleven questions for the people You’ve tagged to answer.
(04) Tag eleven people.

For my dearest fellow spoonies, please do not feel obligated to do all of the steps! If you cannot, that is just fine. ♥ Goodness knows it took me over a month to be able to put all three sections together…

Eleven Facts:

I am ambiverted. When taking the Myers-Briggs Personality test, I consistently score within points of 50/50 between INFJ and ENFJ. Disease has mostly forced me into an introverted lifestyle (the introverted concept of being worn out by too much socializing is similar to the neurological exhaustion faced by those with M.E. after any exertion), but I’d like to think my extraverted side still shows in the energized spark I feel (and hopefully express!) in communicating with so many people every day.

I listen to music in over twenty languages. Or possibly thirty, at this point. I like to mention that as an example of how you don’t necessarily need to able to understand every word–or even any word!–to feel the emotions behind a piece of art. Some of my favourite artists/bands sing in Romanian, French, Russian, and Japanese.

If I were the type for tattoos, I would get one that said “No Enemy Within,” referencing this African Proverb. Alas, I think the human body is beautiful enough without them, though I do NOT judge those who have or are even covered with them. I’m not sure where I’d get it placed, but since it won’t be happening, I don’t have to know…!

As far as television, I usually end up loving shows that don’t make it, or only last a season or two. Similarly, with films, I tend to end up liking the ones that have 2 stars, over four. (It’s unintentional, I swear.) I’m truly baffled when I enjoy a mainstream production!

In addition to English, I also speak French and Japanese. I was intermediate at both, but I’m not sure if my memory would permit that anymore.

I’m teaching myself to be ambidextrous. I used to be able to write with my other hand quite well, but that’s no longer the case, so I guess I have to relearn! It’s been a great help to managing the muscle fatigability of myalgic encephalomyelitis.

I’ve been drawing for twenty years. But with the progression of the muscle weakness, it’s become incredibly taxing on my arms. For the past two years, most of my artistic abilities have been focused on painting, but more recently I’ve gotten into the art of zentangles!

I love watching figure skating. Many years ago, I used to watch it all the time. I’m not sure why I stopped, but I picked it up again recently. To my surprise, the same names were being thrown around, so perhaps I haven’t missed much? My favourite performer was Irina Slutskaya. (Somehow, my absolute favourite performance made it to YouTube–it’s featured in the first three minutes.)

My furbaby is a Yorktese named Muffin. She’s a Maltese and Yorkshire terrier mix, and sort of “accidental” gift. A number of unusual and unfortunate circumstances made it so that in 2009, I was the only one with the means to buy her medicine she needed to survive. A family member wanted to use her for breeding, but their “supplier” didn’t take very good care of the animals. *sigh* My showing up when I did saved her life, and I’ve since gotten her spayed and happy as my beloved pet, instead of a source of income.

I’d never had an avocado, until this year. Actually, until this month! And I probably still wouldn’t, had a friend not recommended a guacamole recipe. (The woman in the produce section was just as shocked as you probably are… Did you know scientists think they’re dinosaur food?)

I have a photographic memory. But I wasn’t always like this. In fact, I used to be amazed at and envious of people who had this ability. After developing severe cognitive dysfunction as a result of this illness, the wonderful concept of plasticity utilized whatever parts of my brain still worked. For me–and perhaps my history of being an artist had something to do with this–it just so happened my visual memory was practically unscathed, so my neurons latched onto that as a way of processing information since it worked the best. (I wouldn’t say I have an eidetic memory, because that is supposed to encompass more than just visual cues. Then again, I can also play instruments by ear, so, who knows!)

Luna’s Questions:

What was your first perfume and how did you acquire it? Outside of dipping into my mother’s stash as a child, Chanel’s Chance was the first I ever owned, as almost all perfumes get me ill. But not that one! Someone gave it to me in a gift bag while I was in a hotel during a hurricane evacuation. The first I ever bought for myself? J’adore from Dior.

Do you prefer bar soap, shower gel, or something else for bathing? Dove’s half-moisturizer hypoallergenic soap, for me. I do love shower gels, but in a choice of drying out my skin to get a certain scent, or being soft and clean and then just applying body sprays afterward, well…

If it could be any colour of the spectrum, what would your “natural” haircolor be? Can I answer crimson? I love my hair that colour. (Note: This is not me.)

What was your favourite childhood movie and do you think it influenced your development?The Flight of Dragons, and yes, probably. It at least gave me a firm devotion to mythological creatures, which has been a focal part in my artwork for years.

What is your favourite museum, or if you’ve never been, which would you like to visit? I have only been to a small local one where I used to live; it had a giant skeleton of a dinosaur-fish. (Note: Still not me)

If you could domesticate any animal, which would you keep as a pet? Realistically, probably a fox and a raven, which are both possible. Unrealistically, a panther, but…

Do you think your name suits your personality? It means “goddess of victory,” so yes! But mostly I go by my nickname of Kit, and still, yes.

If you could do it all over again, what career would you pursue? If I could do it all over again, I would have taken the art university scholarship and focused on that; at least I can still do art every once in a while, where as there isn’t much you can do in the way of neuropsychological research when you have this much illness.

Where is your “Happy Place”? San Francisco. My spirit feels alive in its beauty and peace, and the kindness and acceptance of the people there. But right now? I’ve learned to love my bedroom and make it my happy place, expressive of me and my tastes–after all, I am in here almost 24/7!

What was your least favourite “required reading” book in school and why? Uh… Anything by Edgar Allan Poe, and oh, Beowulf… OH, wait. LEAST favourite? I can’t stand Shakespeare… Nothing. No Romeo and Juliet, no sonnets, no MacBeth, no Hamlet, none of it.

Did your family have any odd traditions growing up? I guess I didn’t, because I can’t answer this question no matter how long I stare at it.

From Me to You:

What is your favourite language?

What is your greatest fear?

Do you have any artistic outlets?

Why did you start blogging?

How do you feel about dried cranberries?

How would you describe your fashion sense, or your desired fashion sense?

Like this:

A break from the normal health posts to be honored with The Sunshine Awardfrom my good friend Luna.

Somewhere along the line, it became the Dark Sunshine Award when its’ picture changed from normal to this… Which is fairly appropriate, don’t you think? A rainbow at night… Dark sunshine… Anyway. Apparently this one comes with rules!

Rules for the Sunshine Award:

Post the award picture with a backlink to the person who nominated you.

Answer the ten questions posed to you.

Pass on the award to 10 or more bloggers.

The Questions:

Favorite color: Red. Definitely red.

Favorite animal: Too many! But among the things I have a soft spot for, are cougars (or anything resembling a panther, truly), bats, goats, ravens, foxes, and wolves.

Facebook or Twitter: Definitely Twitter, for allowing me to connect with the audience mostly associated with this blog, and share thoughts in a way that’s brain-friendly.

My passion: Perhaps it is sharing what I know, since I seem to have acquired a varied amount of knowledge on relatively uncommon topics…? (Of course we can’t really know-know anything, right?)

Getting or giving presents: I’m always an anxious ball of excitement when I’m waiting to give someone something, so getting them is at least easier–less decision making! But I love buying gifts for people for no reason at all–most Leo’s do!

CDC agrees that M.E. is not the same as CFS:

"Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." -- Centers for Disease Control and Prevention (CDC), US source